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Self-Stimulation

  • Posted on July 28, 2014 at 10:20 AM

From the outside looking in, perseveration can look upsetting. Imagine Alex, a fourteen year old boy, waking himself up at 5 in the morning so he can get the first crack at the computer. For two or three hours—however long it takes for someone else to wake up and take a turn—he’ll sit, stand, bounce, and jump in front of the computer to the sound of the VeggieTales theme song. The clip lasts from one to three minutes, depending on the version he finds on YouTube, and he watches it over and over and over again. Occasionally, he’ll move to different versions of it. Sometimes he’ll even move on to different songs, like “The Hairbrush Song.” Rarely, he’ll watch a whole episode.

Alex “stims” on VeggieTales. “Stim” refers to self-stimulation, which is an outside-looking-in coinage of autistic behavior. Basically, the implication is that the person is providing him or herself with stimulation, and that this is somehow unusual.

Think about that for a moment. When I was growing up, all the parents—not just mine—were always encouraging us kids to “amuse ourselves.” You’d hear parents of typically developing children encourage the same thing now, except that it’s so much easier to do when we provide our kids with technological devices like Wiis and smartphones, so “amuse yourself” barely takes any encouragement at all. Instead, we hear parents complain that their children are too connected.

Therefore, one must conclude that self-stimulation isn’t the problem. This leads to the obvious assumption that the unusual nature of autistic self-stimulation is the perceived problem and that, because it’s unusual, it is somehow damaging or destructive.

So, let’s go back to Alex. If you interrupt him before he gets it all out of his system, he gets upset. When upset, he may bite his wrist. He may pinch others. He may pull at others, especially the person who displaces him in front of the computer. The problem here isn’t that his self-stimulation is atypical, nor even that he’s compulsive about it. The problem is his inability to cope constructively with being upset.

The thing that gets me is that it’s supposed to be self-stimulation. We all do it. It’s a normal behavior. But since autistic people aren’t “normal” people, the way they choose to stimulate themselves isn’t “normal,” either. And the point is…? They’re not trying to stimulate “normal” people, they’re trying to stimulate themselves, so why not just let them get on with it?

Let’s do some contrast. Mark is a compulsive Facebook user. He’s in groups. He even started his own group. He plays games. He chats with friends and strangers alike. He’s more social on Facebook than he is in “real” life. And, from the people I’ve seen out in the “real” world, these are perfectly normal behaviors. But they’re not behaviors I do, nor am I particularly empathetic to Mark’s compulsivity with Facebook. I just don’t get the attraction.

On the other hand, I like to watch television shows and movies on my computer. I’ll start and stop them in between doing my work. I’ll compulsively run through an entire television series in a matter of weeks, depending on how long the show lasted. Considering that Netflix and Hulu thrive on this trend, I know I’m not alone. It’s a perfectly normal compulsion. But they’re not Mark’s behaviors, nor is he particularly empathetic to my compulsivity with Netflix. He just doesn’t get the attraction.

We don’t get the attraction for Alex, either. But it doesn’t matter. It’s a “live and let live” thing. It’s self-stimulation!

New Schools

  • Posted on June 8, 2012 at 8:00 AM

We expected Alex to go to a new school next year.  It’s time for that oh-so-fun transition between grade school and middle school, and we’ve been preparing him for that transition for months now.  What we didn’t expect was for Ben to move to a new school in the middle of his grade school years, but apparently that’s exactly what he’s going to do.  And we left ourselves little time to prepare.  We had a few days to get a few pieces in place and we’re going to start acting on those pieces before school starts next year, but for a little boy that struggles with transitions it doesn’t seem like enough.

Yet, I can’t deny the need for the change.  Ben’s needs cannot be met—at least not in a progressive, developmentally appropriate way—at his current school.  The new school should be able to meet those needs and may bring new insight that leads to new solutions.  The only thing is that the act of transitioning Ben through such a major change could derail what progress he’s made this year.

So, we’ll bear what we have to bear and make it as bearable as possible for him.  Meanwhile, Alex seems to be excited—not anxious—about his impending transition.  Hopefully that lasts through the beginning of his first year in middle school.  He certainly ended this year with a fun, exhausting bang!

Maternal Stress

  • Posted on November 13, 2009 at 11:53 AM

According to a news brief: “the daily physiological and psychological toll on mothers of adolescents and adults with autism is documented, revealing patterns of chronic stress, fatigue, work interruptions and a significantly greater investment of time in caregiving than mothers of children without disabilities.”  The study cited revealed “physiological residue of daily stress” in the form of significantly lower cortisol levels.  According to this brief of the study results, the primary distinction they looked for within the population of mothers with autistic children was “a history of elevated behavior problems.”

While I certainly recognize why this distinction would be appropriate from a research stand-point, I propose an equally important distinction would be to consider parental response.  After all, behavioral patterns of the children are not within the parent’s control, but the behavioral response of the mother is within her own control.  The news brief concluded with this statement from researcher, Leann Smith: “We need to find more ways to be supportive of these families.”  I do not disagree, but perhaps there is something more immediate that parents themselves can do for their own health and well-being.

See I have a hypothesis: mothers who accept autism will have more healthy stress levels and less stress-related health risks than mothers who are constantly fighting against autism.

The key thing for me is this:  “Cortisol levels were found to be significantly lower than normal, a condition that occurs under chronic stress, yielding profiles similar to those of combat soldiers and others who experience constant psychological stress,” (emphasis added).  Considering that many mothers who are traumatized by their child’s autism use language similar to that used in warfare – like “fighting” and “battle” – is it really surprising that they would have profiles similar to combat soldiers?  They are combat soldiers—they are waging a war against autism.  Think of the “I Am Autism” video.  That video used the language of war, not unlike the language used when describing terrorism that happens in one’s home country.

As parents, we can choose to bring stress upon ourselves by waging a war against autism, embracing the psychological risk-factors of a soldier’s lifestyle in the process.  Or, we can choose to be parents, not soldiers, and simply raise our children.  Personally, I believe the latter is the better choice, for our own sake and for the sake of our children.  I hope they continue this line of research and add other factors to see how parental responses to autism affect the outcomes for those parents.